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Marcy B.

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1 reviews

Review for Muscular Dystrophy Association, Tucson, AZ, USA

Rating: 5 stars  

My family has four generations of Becker's Muscular Dystrophy. It is the same basic disease that the wheelchair kids that you see on the telethon have, except it is non-fatal, and only affects the large muscle groups. We are blessed that it doesn't affect the mind. David is in all honors classes, robotics club and a straight A student. The women in my family carry the gene, and their sons have a chance of the disease. My oldest son was diagnosed with it in 2005. From the moment that we had an official diagnosis, the MDA has been there to help. My son, David, goes to the neurology clinic twice a year and we do not pay anything for the visits. They provided David with his first wheelchair, custom made specifically for MD kids. When he outgrew it we discovered that the lack of funding had ended the program of providing wheelchairs, but that they had a collection of wheelchairs in their "loaner closet". We donated his old one, and now he is using a chair that they provide. We have been invited to summer camp every year, but always had conflicts until this year. They have a great support community, and every person I have spoken to at the organization has bent over backwards to help our family.

My uncle, and my grand uncle have both participated in various clinical trials over the years in efforts to find a cure, or a medicine that will work to alleviate symptoms. When they were diagnosed, kids with Duchenne MD(the fatal version), only lived to be 17-20. Now they are living into their 40's. That is what this charity has done. Those trials and the science behind them were organized and paid for with funds from the MDA as well as a government grant. This year there are two possible CURES in human testing. The medical expenses, wheelchair and camp are great, but the real reason I am a staunch believer in the MDA is because they are working to find a cure, and it looks like it is finally happening. That is why I support the MDA. They are so close to finding an actual cure!

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